On 17th June 2021 I was diagnosed with 4B Classical Hodgkins Lymphoma. It was no longer in just my lymph nodes but had also metastasised to my pancreas, kidneys, lungs and bones.
I first noticed symptoms back in December 2020. I had flu-like symptoms such as body aches, fatigue, night sweats and fevers, I also had lower abdominal and back pain that I can only describe as if there were a watermelon weighing down all my organs. I initially put it down to a new job that kept me on my feet for long hours which my body certainly wasn’t used to and I assumed it was simply run down. Within a week the symptoms disappeared.
The following month I tested positive for Covid-19 and had to isolate for three weeks. Halfway through isolation the symptoms returned, but now the abdominal pain was so severe it was more agonising than having appendicitis and could no longer be subdued with co-codamol and ibuprofen. I called my GP who referred me for an ultrasound and to a clinic accepting covid patients, but like so many, as soon as I arranged the appointment the pain had gone and I could no longer describe the severity of it. I was prescribed buscopan and sent on my way.
It wasn’t until April that I had the ultrasound but by then the monthly aches and pains were back to being fairly easy to control with over the counter pain relief and as expected the ultrasound results came back normal. In May the pain had once again become unmanageable and the night sweats left me changing my clothes throughout the night, sleeping on towels and flipping the duvet and pillow back and forth to find the driest side, but since having Covid I now had something to pin the blame on and convinced myself I had long covid as so many of the symptoms were identical.
By June I was overdosing on paracetamol on a daily basis just to keep the pain at bay but even that wasn’t doing the trick. One Friday I phoned NHS 24 who referred me to the immediate assessment unit to have bloods taken due the overdose.
The doctors couldn’t understand why I was so much pain and initially sent me for multiple x-rays and ultrasounds. Eventually they came to the same assumption as most do: female + pain = eh, gynaecological?, and so I was admitted to the GYN ward. But still the doctors couldn’t figure out why I was in so much pain and even told me they were going to discharge me – but not until they done one last ultrasound. This time round they found a tiny cyst on my right ovary – not considered noteworthy – and trapped fluid that was believed to be due to the appendectomy years prior but it still required further investigation to be sure. It was then that I had the first CT scan of my chest which revealed I had fluid around my lungs and the doctor told me they were going to perform another CT of my neck to look for swollen lymph nodes to which I responded joyfully and incredibly high on pain relief pointing at my neck, “oh yeah, I’ve got a few of those.” I hadn’t noticed them until the week before I went in to hospital and I didn’t connect them to my other symptoms other than a brief google search of ‘swollen lymph nodes’ which actually led me to lymphoma, but the thought was swiftly shut down as I had been down that rabbit hole so many times before and it had never amounted to being anything. Being as medicated as I was, I also didn’t work out that by this point they clearly knew what they were looking for and that it was lymphoma.
After my CT scans I was sent for a biopsy of my neck and before the doctor even took a sample he told me he was 99% sure that is exactly what it was. And of course he was right, it was in fact Hodgkins Lymphoma and the following week I was sent off for a PET scan to determine the staging. Up until this point the thought of having cancer didn’t really scare me (that could also be down to it all going so fast and being so doped up on drugs), not until the haematology team received the initial scan a few hours later and made the decision that I neither had the time to wait for the full report or go through fertility preservation and I had to start an aggressive chemo regime the very next day.
I had 3 out of 4 cycles of escalated Beacopdac as an inpatient which left me with such awful mouth sores and nausea that mean I couldn’t eat or drink. I lost 3 stone (19kg) in weight and had to have a nasogastric tube inserted, being so weak and bed bound also meant I had to have physio to regain the strength and ability to walk again – something I am still struggling with. I was finally released from hospital after two months of countless injections, blood transfusions, temperature spikes and a few days with a catheter and oxygen to have my final chemo cycle at my local day clinic and on Thursday 30th September I received a phone call from my consultant to tell me that I am in full metabolic remission.
From diagnosis to remission my story was over in split second and I find myself still processing what I went through, but I hope by sharing my story I can help at least one person in the same position that I once found myself in.
